Trying To Get A Grasp On Elaborating This "dizziness" Symptom...along With Other Theories

[kaevne]

Hi guys, I'm a 28 y/o male diagnosed with POTS 1 year ago by a POTS specialist via TTT, symptoms for 2 years. I do not have EDS or anything other related disorders. I had Lyme when I was younger that was cleared by a 3-month dose of antibiotics, along with chronic Hep B from birth. I've lurked for a while and I wanted to post about my experience to get some feedback. Sorry for the length of this post.

First off, I've been trying to describe this symptom of chronic dizziness in a way that better elucidates how I feel. To me, I don't think dizziness is quite the right word. I think of dizziness as the feeling you get when you play that spin-the-bat game. Like your eyes are spinning and you can't keep yourself balanced. This isn't what I'm feeling whenever I'm upright.

I want to verify that I am feeling the same dizziness that everyone else here is feeling. In some ways, I'm trying to confirm my diagnosis. I want to try to find the best description of how I feel, because there really isn't another disease or disorder I can think of that would help outsiders understand.

Here is a list of the many different ways I would try to describe my symptoms.

1. It feels like my head is way heavier than it really is. One forum user here described it as "head full of cement" feeling. This is very accurate to me. When I move my head, I feel like I don't have a correct grasp of where my head position is. It feels like my head is 50% heavier than my brain thinks it is.
   
2. Another analogy I use is that it feels like a volleyball is tied to a rope that's attached to the top of my head. When I'm moving around and looking around, it feels like the volleyball moves in that direction and pulls my head's momentum there for a little bit.
   
3. It feels sort of like the dizziness you get when you're slightly buzzed from alcohol. It's not the "head is spinning" sort of feeling when I'm super smashed. It's more of the slight off-ness that you feel in your head balance that's magnified 10x, yet you can still balance the rest of your body just fine.
   
4. After a while, usually in the afternoon, the dizziness feeling gets paired with a sort of throbbing orthostatic headache. My POTS specialist said that this occurs because POTS' poor blood management causes my blood vessels in my head to constrict or contract by magnitudes, causing a throbbing headache. For the first year of my symptoms, I was ignorant of #1, #2, and #3, and I thought I really just had an orthostatic headache. I went to many neurologists about a possible CSF leak and found nothing. I now recognize that I'm not actually feeling pain in #1, #2, #3, and the pain only occurs when an orthostatic headache comes on. It was only until I was referred for a TTT that I was diagnosed with POTS. (60 resting 100 standing). My primary symptom is chronic dizziness, and the orthostatic headache only happens sometimes.
   

Second, I want to verify various experiments, observations, and theories:

1. I get a feeling of immediate relief when I lie down. It does sort of feels like the blood is running back to my head. It feels my heaviness is being slowly reversed. Like tiny gremlins are removing cement from my head one block at a time. This is the best I can describe the relief.
   
2. I get a degree of this same relief from being in a swimming pool with the water level up to my neck. This makes sense because, theoretically, the water pressure forces my blood back up to my head? Can anyone else verify this?
   
3. I feel less dizzy in the morning when I wake up, and this gets gradually worse as the day goes on. I assume this is because I have a full night for the blood to reset back to my head. As the day goes on, the blood drains from my head, in spite of the attempts at compensation from my rapid heart. The greater brain hypoperfusion causes more dizziness.
   
4. Caffeine, Marijuana, and Nicotine have no effect on my symptoms. Alcohol makes the dizziness worse and can trigger a throbbing headache.
   
5. Midodrine lessens the heaviness feeling for 1-2 hours after I take it. It doesn't take it away. It helps take away 30-40%, I would estimate. I am currently on 10mg 6x a day.
   
6. For the 3-5 years before the onset of my POTS symptoms, I started having to urinate more and more frequently. It was only after I was put on Fludrocortisone, DDAVP, and sodium tablets that this went away. I now urinate only a few times a day, like I remember for most of my life. I definitely think the frequent urination had something to do with POTS. Maybe something to do with renin?
   
7. Water consumption has a definite bearing on the intensity of my symptoms. Staying hydrated through the day lowers the average dizziness.
   
8. I can get good relief for 15 minutes from chugging 2 full large Gatorades quickly.
   
9. A family friend who is a cardiologist who does not specialize in POTS says that POTS is a strange disorder that seems to frequently strike otherwise healthy young people. He believes this is an important clue (possibly for the auto-immune component).
   
10. I find it strange that, as a male, I came up with POTS. I'm part of the minority, and I don't experience any of the other symptoms people here seem to get. I don't get fatigue, palpitations, or syncope. I exercise fine and 3-4 times a week. I have no problem doing heavy weights and heavy cardio. Eating has no effect on my symptoms. I still work fulltime as a software consultant, though it's hard. This perplexes me because it feels like I don't have what everyone else here has except for the dizziness. My doctor reminds me that I should feel lucky that I have such a mild form of POTS. He frequently sees patients who can barely stay upright and faint at the office.
    
11. Compression socks, stockings, and the abdominal binder do not seem to have a noticable effect. At least, not one that's any greater than the Midodrine.
    
12. Pyridostigmine did not have any effect for me more than the Midodrine.
    
13. I felt very depressed for a while from the symptoms. I spent much of my idle brainpower feeling sorry for myself and felt borderline suicidal. I was desperate, and went to my PCP and she told me I can try counseling or Lexapro. I went with Lexapro. After a week, I was in a great mood and didn't have that constant morbid thinking. Even though my POTS symptoms were the same, it felt like a veil was lifted from my eyes and the whole world was brighter.
    

Thank you for reading. This is a collection of my thoughts and observations over the years, and I'm also looking for some validation on any of these. I am still optimistic that my POTS will clear on its own, and that we are on the cusp of a breakthrough in POTS research. Let me know what you think and your experience.

[shathaway0811]

That is exactly the kind of dizziness I experience regularly. It's hard to explain because it's not "going to fall over" type-dizzy, it's much closer to just a general disorientation/lack of sobriety dizzy. And it is generally accompanied by palpitations/weird visual stuff. Opposite to you though, it's generally worse in the morning and gets better the more I move around. The more I stay still for a long time (sitting down or standing), the worse it tends to get.

Hope that's somewhat comforting!
Sarah

[corina]

Hi kaevne, welcome to the forum! I remember how, before I got a diagnoses, I found it so strange that lying down solved all my problems (except for the frequent urinating)! Hope you will find some comfort here!

[targs66]

Welcome to the forum! Thanks for your post. Dizziness seems to be the most debilitating symptom for many here on this forum, but it seems like there is a huge amount of variability in what triggers it and what resolves it. For example, many say that heat is a trigger for them, but I find the cold intolerable. It's also interesting that you are better in the morning and worse as the day goes on. I think most people here (myself included) are much worse in the morning, which does seem odd given that it seems that lying flat would correct the orthostatic hypotension.

I hope you can get some answers from reading about others' experiences here on the forum. Please keep us posted on your progress.

[Nymph]

Hello!

A couple of things:

My dizziness is like an alcohol buzz, but without the fun. Sometimes I also get the heavy head feeling.

I only had dizziness and occasional pain in my legs, and blurry vision, as well as anxiety-type attacks since these becam noticeable in 2010/11. I did not develop exercise intolerance until this past year, leading to my POTS dx. I also consider my symptoms mild since learning more about what others experience. In fact, I am not sure if I qualify as fully-POTS or not, but am sure that I have some dysautonomia that affects my quality of life.

There are several other things I relate to but don't have the time right now. Welcome and I hope you continue to improve.

[SarahA33]

Hi Kaevne! Welcome to DINET! I'm glad to have read in your post that you've found success with midodrine, florinef, and compression. Are you still taking DDAVP?

I'm sorry that you have headaches, I experience migraines, so I can relate to the pain you go through. My POTS doctor said that 70% of his patients experience migraines as one of their top 5 symptoms.

You had wanted some feedback about dizziness symptoms improving when you are supine, this link provides some info. You can also use the search bar in the corner above and type in some topics from past posts that might be of some interest to you..
http://www.merckmanuals.com/professional/cardiovascular-disorders/symptoms-of-cardiovascular-disorders/orthostatic-hypotension

Your dizziness sounds just awful. Fortunately mine only becomes symptomatic when standing for more than a few minutes or when in9itially standing up. Have you talked to your neurologist about vertigo in the past?

Again, welcome to the Forum!

Sarah

[kaevne]

Thank you guys for the confirmation. It is strange how varied everyone's symptoms are yet clearly there's at least some overlap with my experience. I do feel like it's comforting to know that there's at least some people in the world who know exactly what I'm going through. Also, I am still taking DDAVP. @Nymph, I'd love to hear any more comments you and anyone else might have.

[Eagle3312]

Hi kaevne

Here is my experience. My dizziness improves with lying down as well and usually much better in mornings. It's worse after eating in the night. Also have migraines and alcohol makes it worse. The dizziness itself is a feeling of light almost floating head some times accompinied with weakness. I haven't noticed any specific benefit with hydration though.

Eagle

[Dyspatient]

Well, lucky me, I get both kinds....vertigo and what you're describing as your type (which I'll just call "dizziness" because that's what I call it). I term the former "vertigo" because it's actual rotational, eyes rattling in your head, room spinning and lurching around vertigo. Doesn't matter if you're sitting or laying or standing on your head, if I move my head a particular way (never know which way it's gonna be), it triggers it and I have to just grit my teeth and hang on for the next 30 seconds or so until the room stops moving and my eyes stop rattling around.

I term the latter "dizziness" and for me, it is a sort of disequilibrium that is less acute than the vertigo attacks, but far more pervasive. My dizziness is so very much like what you describe, right down to the analogies you use to describe it.

That I get both sometimes seems to bother doctors. Some of them seem frustrated or disbelieving that I do actually have vertigo and "dizziness". I've had some providers try to fit me into an "either/or" group. Not sure why. You can have both. I get vertigo from sinus issues (vasomotor rhinits isn't helping) and migraines. I get the dizzies from...well everything else, but largely hypotension and it's a fatigue symptom for me.